There are many ways your life can change, when you start caring for a person with a chronic illness. Several of the caregivers we interviewed spoke about their experiences of trying to balance many people’s needs at once—namely, the care recipient’s, those of friends and family, and their own needs as a caregiver. They describe how they made time for things that were important to them; or if they had lost the balance, what they did to try to find it again. Most caregivers agreed that a good balance was important to their sense of well-being, but that it was a struggle to find. There was recognition that even when balance was established, it could be easily disrupted as conditions changed, and that one had to be open to this reality.
Balancing
Trying to find the right balance
I think it can be a really beneficial thing if you allow it to be. Again, I think it’s finding balance and knowing who you are and finding yourself and still taking care of yourself. I think, honestly, taking care of yourself first is the most important thing.
Trying to find the right balance
I think there certainly have been times like that. […]We were newly married and my grandfather had passed away, so we had essentially put in separate living quarters for us at the house where my mom was with my grandmother. And that was fine at the time, because we were newlyweds and we were both starting our professional careers anyway and it worked out for everybody.
Marc said, "It is continuously seeking balance, it is a constant search." Ginny thinks that balance in life is something she is still working on; taking the time for herself continues to be a challenge.
Challenges with balancing
The interviewees spoke of a wide range of challenges in finding the correct balance. It depended on a number of factors that included their personal situation, the needs of the care recipient, and the stage of life they were in. Some challenges were more difficult to resolve than others. For example, Ginny's life goes on hold for a little while when her mother has a crisis, until things get back to normal. Sheni started paying her daughter to care for her father, although the Public Guardian, who is supervising her husband's expenses, did not allow this.
Trying to find the right balance
I think she wants more time at this time to do more things on her own, than with my being here. That’s my thoughts. It’s terrible to say.
Trying to find the right balance
Dealing with a situation like this—the whole hospital scenario, the whole medical issues, the seeing their father in a coma, dealing with the fact that I was stressed out because of it. I was running back and forth to the hospital daily and including when SARS was on.
Making changes to find a balance
Almost all the caregivers we spoke to needed to make changes in routines, ways of working, and daily responsibilities in order to balance their day and get everything done. These adjustments depended on the caregivers' situation and what was feasible in their circumstance. Several caregivers opted to move to a more appropriate setting, and to reduce or change their working hours. Richard said, "I was the house cleaner, but I wasn't doing a good job. Eventually, Vivienne herself said to me 'Why don't we get a firm of house cleaners to come?' and eventually I succumbed. At first my pride said, 'I should be able to do this,' but then I finally realized, 'this is a lot of constant pressure on me. I'm not doing a great job of house cleaning.'"
Sometimes it required quite a bit of effort to make the right changes. For example, Donovan tried several different approaches for support with the care for his wife. For example, they hired someone full-time for a few years, and then had someone coming in part-time. Now , they have live-in caregivers. However, despite the extra help, there has been no reduction in Donovan's stress and tiredness.
Trying to find the right balance
I’ve never left the city because I’ve always been too concerned about her to leave. But I’m getting to the point where I’m 27 and I think have a right to live my life. She’s my mom and I know she wants me to live my life at the same time. So, I am toying with the idea of leaving, which is something I’ve always wanted to do.
Trying to find the right balance
When I started out with my husband’s income, it was cut. So, we were struggling with his pay. I actually made a list of all the provinces and chose which ones were too expensive; they were off my list. [A city in MB] is my hometown. I didn’t want to go back and I said, “Hey let’s go to Saskatchewan.” It was affordable. We bought this house, and we were able to settle down and retire.
Some caregivers found a better balance by making changes that affected them personally and directly. Rachel, for example, made new friends that were able to provide more support for her. Other caregivers found ways to have more time for themselves or with their partner.
In some cases, people realized they needed to change their way of thinking or their approach to caregiving in order to feel more at ease. Other caregivers were working on increasing their patience. Joanne managed to stop feeling guilty about having her own time, while Marc felt that the caregiving had also led him to appreciate the spiritual dimension of life.
Trying to find the right balance
So, there are some that learn just like that. That’s maybe the road I took. I learned like that. And it’s never all done like that. It’s never finished, it’s a journey. So, I’ve reached a point where I have much more serenity. I got up at night. It’s positive what I have in my head! I sing to myself and I fall back asleep. I mean, I have a lot of caring time to give him, and I give it.
Trying to find the right balance
My education was only through my doctor. But they told me how to take care. “Life,” he said, “well your lifestyle will be very different”, and certain medication he has to take which he never had before—also taking care of the food or lifestyle.
Like Marc and Madhu, other caregivers also learned to make changes. Mike, for example, realized that, in the beginning, he wanted to do everything to help his wife. In time, he noticed that he had to take a step back: "After almost two years now I'm starting to finally realize this, that I actually have to be slacking off and let her do more what she wants to do."
Trying to find the right balance
I’m not a napper, so I don’t really find ways to make up sleep necessarily. But what we do [is]—Luke and I are good at strategizing with one another about if the plate’s getting too full—what else can we take off the plate? Because the caregiving is not necessarily going to decrease or get taken off the plate, right? You’ve got to find other things.
Trying to find the right balance 2
How do I see the future? Well, I guess as a family caregiver, for me the future is 5 minutes from now. I try not to cast a net too far ahead of me because I’ve learned in 34 years that things can change on a whim, and the idea for us in what we’re doing is maintain my mother’s current functional abilities and her quality of life.